I've Never Let Turner Syndrome Slow Me Down - Turner Syndrome Foundation //

My Story: I’ve Never Let Turner Syndrome Slow Me Down

As part of its monthly My Story series, the Turner Syndrome Foundation (TSF) highlights individuals with Turner Syndrome (TS) and their parents/caregivers. In this post, Dori, a 43-year-old woman who was diagnosed with TS at four years old, shares her story. Dori is a strong, independent woman who has never let TS hold her back.

Note: Everyone’s journey with TS is different. Please consult with your health care providers for guidance regarding your health issues and appropriate treatments.

My Diagnosis and Childhood

“The main thing I want others to know is that a diagnosis of Turner Syndrome doesn’t have to be scary.”

Dori, woman with TS

I was diagnosed with TS at four years old. I had an older brother named Jeremy (who is now deceased) who was five years older than me. Our parents had adopted both of us. When we were kids, my mom noticed that he was growing faster than I was and suspected that something was going on. That led to my genetic testing and diagnosis. The main thing I want others to know is that a diagnosis of TS doesn’t have to be scary.

The biggest effect I have had from TS is short stature, but I have been in and out of the hospital all my life. When I was little, once a month my mom and dad would drive me from Michigan to Wyler Children’s Hospital in Chicago for growth hormone (GH) therapy injections. At that time (the 1980s), Wyler was the only place we could find a doctor who knew what TS was. I received GH treatment until about the age of 14 and ended up being 4’6″ tall.

School Years

I was in special education classes for math all through school, and I had to repeat first grade. My special education teachers in high school were especially helpful, and I could visit their room anytime I wanted or needed to. I didn’t get my driver’s license until I was 17, and I didn’t graduate until I was 19, but I didn’t let those things bother me. My first car had a wooden block on the gas pedal so I could reach it. I never let these things slow me down; I’m just glad that I could drive and that I graduated.

Transition to Adult Life and Working

I have had struggles when it comes to jobs, sometimes because of the lack of accommodations, like a stool to stand on so I could reach things. Other times, I think it’s because they couldn’t tell I’m different than most, so they don’t think I need a little extra support. I will admit that I try not to tell my managers and coworkers that I have TS. I’m not embarrassed or anything, but a lot of people I come in contact with know nothing about the condition. It is a complicated thing to explain, and I try never to let TS hold me back.

I have worked at a gas station for the past five months. I have gotten off of Social Security Disability Insurance, which I am very happy about. Now that I’m older, I am proud to say that I’m doing well at this job. On the weekends, I am responsible for opening the gas station at 6:00 a.m. and working in the morning by myself. I like working independently because it is less stressful when someone is not looking over my shoulder, and I can take my time with tasks. This helps both my confidence and independence.

Before my current job, I worked at a nursing home, a daycare center, a dry cleaner, and different gas stations. I have also worked at several fast food restaurants, where I loved our customers. One man in his 70s (we called him “Doc”) would bring us gifts, like a road atlas or socks from the dollar store. I miss customers like that. Each of these jobs had different challenges, but I learned from all of them.

Living Independently

“…I’ve never let Turner Syndrome slow me down.”

Dori

I love country music, and I have been to many concerts, where I have met other fans from all over the country. I may go by myself, but there is always someone I know there. I’ve traveled to many states to go to concerts, even though I sometimes get nervous about driving by myself. I also went solo on a seven-day cruise with a band I was following.

Lastly, I have always struggled in my relationships with men. I had a year-and-a-half-long relationship with a guy when I was 25, but that did not work out. Since then, I have only had a couple of boyfriends, but I try to not let that discourage me. I know other people with TS who are married, so I know it can happen. 

I have always been an independent person, although I do have several family members who live close by. Since the age of 18, I have lived on my own. Except for my very first apartment, I have paid for my rent and other bills myself. My independence probably gave my mom some anxiety when I was younger, but I’ve never let Turner Syndrome slow me down.

Written by Dori, a woman with TS, and edited by Susan Herman, TSF volunteer blog post editor and translator.


For more information about living with TS, click here.

To read more My Story and other blog posts, click here.

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